Nice To See Autistic Twin Sons of Toronto Family Receiving Autism Treatment In New Brunswick

PHOTO BY MARC GRANDMAISON / THE CANADIAN PRESS

The headline of the Toronto Star article Toronto family chases autism treatment across the country  doesn't mention the province to which the family in the Toronto Star article seeking early autism treatment for their autistic twin sons moved  - New Brunswick. Nor does the article itself delve into how the province usually mentioned as a financial disaster could have become a Canadian leader in early autism treatment as it was described by David Celiberti, Ph.D., BCBA-D, President of  the Association for Science in Autism Treatment in an October 23, 2010 commentary "ASAT Responds to Canadian CBC's N.B. Can Be a Leader in Autism Services" and again in his  interview with Dr. Paul McDonnell in the 2014 ASAT summer newsletter.  The essence of the Association of Science in Autism Treatment's commentary was that NB was already a leader; one whose autism service model was worthy of consideration by other Canadian jurisdictions. 

So how ... and why .... did New Brunswick develop an early intervention model worthy of consideration by other Canadian provinces seeking to provide early autism treatment to the autistic children of their province?  Without going over it again in detail intense parent advocacy focused specifically on request for  an early autism intervention prompted the NB government of day to to put out tenders for agencies to provide early autism treatment.  That call was answered successfully by Paul McDonnell and UNB-CEL. who developed the UNB-CEL autism training program in both French and English.

We have previously heard unconfirmed rumors of families in national organizations seeking relocation to NB so their autistic children could receive treatment. It felt good for this autism parent who was part of that very focused, committed parent advocacy team that prompted development of the made in NB autism program  to see the be benefits of the program being received by the children of the Toronto family in the Toronto Star article. 

THANK YOU Conservative MLA Jake Stewart and NDP Leader Dominic Cardy For Speaking Up In Support Of Adult Autism Care and Treatment in New Brunswick

New Brunswick governments have been outstanding in establishing an internationally recognized early evidence based autism intervention service and have made some gains in autism training for Education Aides and Resource Teachers.  

There has been no progress though  in establishing an autism centre for adult treatment and permanent residential care for severely impacted autistic adults with a network of autism group homes around the province.

It is very easy to become discouraged in advocating for adult autism care in New Brunswick.  The establishment of early evidence based autism intervention services was not easy but successes have been achieved.  While there have been backward steps such as the recent hard line 95% attendance requirement, since revised, which did not appear to take into pressures and demands on family and the time available to them the NB early intervention program has been recognized as a leading Canadian model by the Association for Science in Autism Treatment.  Some gains have also been made in provision of autism trained Education Aides and Resource Teachers although much more needs to be done including training more aides and teachers and ensuring that autism trained aides work with autistic students and not be displaced by untrained aides with more seniority.  Adult autism residential care and treatment however  remains abysmal and the first signs indicate that things are not likely to change under the current Liberal government. The NDP and Green Party both addressed adult autism care issues during the last provincial election.  Both the Liberal and Conservative parties were silent on autism issues.    

The adult autism care problem, as reported by Samantha Magee and the Miramichi Leader, has flared up again recently in Miramichi when a 19 year old non verbal autistic man was given notice of eviction from the special care home in which he resided solely because he was now an adult. Several persons including me spoke out yet again asking our government to address the adult autism care issue in New Brunswick.  Specifically we asked the government yet again to build an autism treatment centre in Fredericton near the expertise of the Stan Cassidy Centre which treats autistic children and youths and provide permanent residential care for those with severe dysfunctional autism disorder. The centre would also provide oversight and training for autism group homes in New Brunswick communities around the province.

The Miramichi Leader reported  former Autism Society New Brunswick President Lila Barry's comments urging the establishment of the autism centre based network as described by UNB Professor Emeritus (Pscychology) Paul McDonnell in 2010 and asked the Minsiter of Social Development for a response.   The government response came from Communications Officer Anne Bull:

"When asked if the minister of Social Development has looked into the possibility of building such a facility that could offer diagnosis, treatment and long-term living arrangements, the Miramichi Leader received the following response from communications officer Anne Bull.

“The Government of New Brunswick recognizes the need to provide high quality services that support our province’s families and individuals living with autism. As a government, we are committed to continuing to improve services to families and individuals living with autism. This includes examining the issues around living accommodations and supports for those with high care needs who require services beyond what is presently available. Government continues to make significant investments in services to adults with disabilities. Social Development works in collaboration with the New Brunswick Disability Executive Network and other key stakeholders to recommend on-going improvements to the Disability Support Program, finding innovative ways to support adults with disabilities and their families with the unique challenges they face.”

Communications Officer Bull did not provide a direct answer to the questions of whether the Minister of Social Development had even looked into the possibility of building the facility that could offer diagnosis, treatment and long-term living arrangements. Requests for such a centre have been made for years and it is easy to become discouraged when our government officials refuse to provide a direct answer to such an important question and instead pass the buck to a communication officer to provide a formulaic, meaningless answer.

A bright side to the recent events has been the support of Conservative MLA Jake Stewart and NDP Party Leader Dominic Cardy.  Mr Stewart was also quoted by the Miramichi Leader's Samantha Magee:

"Jake Stewart, Progressive Conservative MLA for Southwest Miramichi, agreed that the system was failing the Keenans and other families like them in similar situations. “Adequate facilities are needed in New Brunswick to alleviate strain on families found in this situation, and on individuals like Brandon who clearly deserves better. Also, a change in policy in Social Development is most likely needed,” said Stewart in an email to the Miramichi Leader. “‎I’m offering my support in the construction of new facilities, a potential change in policy, and of course I can and will continue to be a voice of reason for the Keenan family,” said the MLA. “But first, it’s important to allow Brandon to stay at M.O.R.E. Services from now on without worry of being displaced due to his age. If another facility can accommodate, this too may be beneficial. Time is of the essence.”"

NDP party leader Domonic Cardy responded to the recent events in Miramichi with a Facebook commentary:

Dominic Cardy

February 27 at 6:21pm · Fredericton · 

Adults with autism get a raw deal in New Brunswick - often shipped off to a facility in Maine. During the election the NDP committed to build a residential facility here in New Brunswick where adults with autism who need the care can get it, 24/7. The Liberal government has been supportive of this idea but, as you can see from the story below, we need to move faster.

This is why we have to rein in wasteful spending: so we have the resources to look after the folks who need our help.

As the parent of a severely autistic 19 year old son who lives at home and requires 24/7 care I know that many parents face daunting challenges caring for their autistic children and find it difficult to continue to provide that care, while earning a living and still find the energy, time and willpower to continue to advocate in the face of government and bureaucratic inertia and indifference  for humane, professional adult autism care and treatment but ... we have no other choice; we have to do our best to remain strong and to remain optimistic and to continue the fight.  

In the meantime THANK YOU Jake Stewart and Dominic Cardy for your support and THANK YOU Samantha Magee and the Miramichi Leader for your attention and outstanding journalism on adult autism care and treatment issues.  

Election 2014: Will Severely Autistic Adults Continue to Suffer Under An Alward Government As They Have Since 2010?

New Brunswick has made progress in early intervention and student autism services but adult autistic needs, particularly severely autistic adults, have been ignored, completely ignored during the last 4 years.  The article below originally appeared during the last provincial election period posted on Tuesday, September 14, 2010.   Zero progress, absolutely zero progress has been seen in adult autism care under the Alward government. 

Everyone has their priorities but for David Alward adults with severe autism disorders are not even on his list. Today we still banish severely autistic adults to the Restigouche Psychiatric Hospital in Campbellton on the northern border of NB with Quebec far from families; most of whom live in southern NB in Fredericton, Saint John and Moncton. 

Community? Not for those with severe autism disorders; not in NB. I will not try to tell anyone else how to vote in the looming provincial election but if you vote for the Alward, Carr, Flemming,  Dube, Higgs government you will likely be voting for the continued oppression of severely autistic NB adults. 

 I would love to be proven wrong, I would love to see David Alward, Jody Carr and other Conservative politicians actually live up to their rhetoric  instead of singing community cliches and posing for photo ops.  I would love to see the Alward  party  build an autism facility in Fredericton, envisioned by Paul McDonnell, Ph. D., near the autism expertise already developed at UNB and the Stan Cassidy, a centre that could also work with enhanced group homes around the province, an autism network that would actually bring severely autistic adults into the NB community.   But I am not holding my breath waiting for an awakening in the Conservative Party of David Alward,  Jody Carr, Madeline Dube, Ted Flemming and Blaine Higgs that has acted in such disregard for severely autistic adults.

Autism expert Paul McDonnell Professor Emeritus (Psychology, UNB), Clinical Psychologist, and  a  major force behind the great progress that has been made in provision of preschool and school autism intervention and education services in New Brunswick,  has provided expert analysis of autism issues to the CBC. In two features, Paul's analysis, and his interview by CBC reporter Dan McHardie, Paul speaks about the leadership role New Brunswick has taken on in providing excellent preschool and school autism services but also points to  the need to address youth and adult autism needs including adult care residential needs as set out in the interview:

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes.

"What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists."

...

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes.

"The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

NB'ers with Severe Autism Disorders Are Not Included in New Brunswick's "Inclusive Community"

New Brunswick's "inclusive" "community living" model is not a bridge to a better life for adults with autism disorders.  There are huge gaps in the model.  Group home staff are not autism trained and are not professionally supervised.  Those who don' fit in, including those with severe autism disorders are excluded, banished to live in psychiatric hospitals in New Brunswick and outside the country.

New Brunswick tells the world that it is "inclusive" and talks incessantly about our "community living".   In fact if a child, youth or adult suffers from a severe autism disorder they are not included in a community, they are excluded, in some cases literally excluded from New Brunswick, and sent next door to the State of Maine.  Desperate ad hoc measures are resorted to, sometimes at great public expense.   Instead of building a modern, autism specific educational and residential care and treatment facility for New Brunswick adults with severe autism disorders they are sent to live out their lives in psychiatric hospitals. 

The group home system staffed with untrained personnel described in the second article below, the Toronto Star article, remains the same today.  The homes are not appropriate places for persons with severe autism disorders. Even some moderately affected by autism can not function in these locations. The NB civil servant quoted in the Toronto Star article that follows this comment said the group home system in place then, 9 years ago, worked well "for most people".  "Most people" 9 years ago did not include, and most people today, does not include youth and adults with severe autism disorders. 

Community living for New Brunswickers with severe autism disorders does not exist.   Following are 2 reported examples stretching back 9 and 11 years of how our so called inclusive community has treated, and continues to  treat, NB autistic youth and adults with severe autism, 2 examples which highlight the need for the residential care, treatment and community centre envisioned by NB autism expert Paul McDonnell : 

A.  11 years ago members of the Autism Society New Brunswick including the father of an adult son protested at the Centracare institution in Saint John where the man's autistic son was living:

PARENTS DEMAND RELEASE OF AUTISTIC MAN FROM PSYCHIATRIC HOSPITAL FREDERICTON, New Brunswick, Canada:

[NOTE: I have removed from the article the actual names of the father and son at Centracare  and of a mother advocate and son no longer publicly active on autism issues, and substituted non representative initials -HLD]

Parents with autistic children confronted New Brunswick's Family and Community Services Minister, Tony Huntjens, on July 25 and demanded the release of a 21-year-old autistic man being held in a psychiatric hospital in Saint John.

"This is the most difficult thing I have ever faced," says AB, who is trying to get his autistic son, GB, out of Centracare, a psychiatric hospital in Saint John. His son has been there for more than a year and AB says he hasn't been given a reason why. "I cannot believe that this kind of lack of compassion and this kind of atrocity will go on so long as it has gone."

Other parents of autistic kids from Fredericton, Moncton and Miramichi came to support AB. But they say their fight goes beyond freeing GB.

"We here today are a group of parents with autism. We live, eat and breathe autism. We know what the struggles are, but as you well know, the incarceration of GB into Centracare is totally unacceptable," said Shirley Smallwood.

AB and his supporters walked from the legislature to Family and Community Services offices. They confronted the Health Minister, who says its takes time to solve problems. "I'll try to intervene and work with the education system and the parents to see if we can come up with a solution."

The province has set aside Canadian$2.8 million for treating autistic children under the age of five. The group of parents want to meet the Minister again to discuss how treatment can be extended to an older age and be covered by Medicare. Hutchins has agreed to meet AB on July 28 regarding his son. GB.

The protesters claimed that the mental-health facility was not well-suited to the needs of autistic individuals and that GB'S scondition was deteriorating.

GB was placed in Centracare by the Department of Family and Community Services in March. The move was against the wishes of his parents and against the advice of health specialists, the group claimed.

New Brunswick does not have a mental-health facility specifcally designed to treat autistic individuals.

AB said his son was now a shell of his former self, after living in an open Centracare ward. "We see death in his eyes ... every week when we go and visit him," AB said on July 25. "His eyes haunt us." The group planned to take its protest to the Family and Community Services offices on Queen  Street. The parents also want the government to deliver a form of treatment called Applied Behavioural Analysis (ABA) to autistic sufferers in the province.

The Tory government has promised to make the service available to children aged two to five, but the parents argue that is not enough.

One local mother, NL, said the treatment could cost $40,000 a year. Her six-year-old son, TL, is too old to access the services, which still have not been made available to autistic children.

NL said the service was already available in five other Canadian provinces: Newfoundland, Prince Edward Island, Ontario, British Columbia and Alberta.

The treatment had been shown dramatically to improve individuals' autistic disorders, she said. "I don't want to see any other children or families go through this," NL said.

There are roughly 1,000 individuals with autism in New Brunswick.

AB said the group would keep protesting until the Tory government released his son from Centracare. They have collected a petition with 800 signatures supporting GB's release, and they intend to have the petition tabled in the legislature after a new sitting begins next week.

A Liberal critic, Michael Murphy, has promised to take up GB's case
in the legislature.

(Sources: CBC; The Daily Gleaner, July 25, 2003)

2. Nine years ago a 13 year old boy was housed, temporarily, on the grounds of the Miramichi Youth Correctional Centre in a visitor's apartment.  The boy was purportedly sent to Maine aftewards to the Spurwink centre.  9 years later the same inadequate system that brought national notoriety to New Brunswick is still in place.

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital 

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre. Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick" Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't." 

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution." Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him. "This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department. "He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents. This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day. Johnson said she does not know any details of his care. 

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada. He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder. "If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder. "We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people. "We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case." The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents. A Spurwink representative did not return a phone call from the Toronto Star. Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.

New Brunswick's group home community model does nothing to help those with severe autism disorders and even some moderately affected by autism.  We can not pretend that it does. What is needed, what has been needed for more than a decade, is the model described in 2010 by Paul McDonnell:

Paul McDonnell, September 2010

"Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.  Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."  (Bold highlighting added - HLD)

New Brunswick is a Canadian (and North American) Leader In Early Autism Intervention and School Autism Services

New Brunswick is a Canadian, and North American,  leader in early autism intervention and school autism services.  I do not doubt that that statement is enough to prompt a retort from many jurisdictions.  New Brunswick is not one of the wealthiest jurisdictions in Canada, let alone North America, but the fact is that New Brunswick has had publicly provided early ABA autism intervention to the extent of 20 hours per week for ages 2-5 for several years.  700-800 education aides and resource teachers also  received the same UNB-CEL Autism Intervention training.  

These services have been provided by both Liberal and Conservative governments.  The drive to put these services in place resulted from intense, persistent and well organized parent advocacy.  Above all we had the advantage of guidance from local autism experts.  The UNB-CEL program that provided these autism services was able to do so in both of New Brunswick's official languages, French and English, even though the French language Université de Moncton chose not to participate in developing the program.  Ultimately NB was recognized as a leader in provision of early intervention by Dr. David Celiberti of the Association for Science in Autism Treatment.  

Over the past year several international and local experts, listed in the attached letter from Nicole Gervais, Executive Director, have developed an on line program which has provided ABA based autism training to NB teachers and aides. They did so in conjunction with the NB government's new, combined Department of Education and Early Childhood Development. The predecessor Department of Education's officials had long felt that paying the UNB-CEL for the autism training was too expensive and were clearly annoyed that the program resulted from parent advocacy, professional advice and direct political initiative. Officials including the Director of Student Services moved to assert control over autism programs in the Education Department, even going so far as to threaten me with legal notice to stay out of a meeting between the Department and ASNB at which autism training was discussed. Nonetheless senior department officials essentially claimed ownership of the program developed by UNB-CEL and have, over the past year, developed the in house departmental training program described in Ms Gervais letter:

I am very impressed with both the international and local autism expertise involved with developing the program and I have to believe that this program will bode well for New Brunswick children and youth with autism spectrum disorders. Many of the concerns which I raised in a  recent letter to NB autism officials, and raised several years ago, as an Autism Society New Brunswick representative, when advocating for provision of UNB-CEL autism training for resource teachers and aides are dealt with in this program as described. Given the recognized expertise of those who developed the UNB-CEL program further I am certain that the program itself will be excellent.  

I am much less assured though by the in house elements of the program, particularly the evaluation of the candidates practicum completion, in the context of a collective bargaining environment where the parties conducting the evaluations are representatives of the employer in the collective bargaining relationships with NBTA and CUPE Local 2745 representing the teachers and aides respectively.  I have 30 years experience as a labour lawyer in New Brunswick and federally. I have also been very active as an ASNB representative on autism education issues over the past dozen years. On these issues I do not defer to the Department autism experts or to their in house legal advisers.  There will be grievances filed if any aides or teachers fail their evaluations with resulting pressures on those conducting the evaluations.

CUPE Local 2745 in particular has been averse to even supporting autism training for the aides they represent for fear that older aides would be unable to complete training and their ability to utilize their seniority for preferred assignments would be compromised.  As an ASNB president I had invited and met with the then CUPE Local 2745 President to discuss autism training for TA's (Education Aides) at a breakfast meeting at Bolden's Cafe in Fredericton.   She was totally disinterested in my suggestion that CUPE support parents in advocating for autism training for teachers and education aides.  Her successor, the current CUPE Local 2745 President, Sandy Harding, has been much more openly hostile to our efforts advocating for autism trained education aides in their bargaining unit. 

Notwithstanding my concerns over the in house elements of the program I do recognize the considerable expertise both of the international and the local experts involved in the development of the program and that expertise bodes well for New Brunswick children and students ... particularly if the Department officials have the will to properly evaluate those who take the training.  If education officials can stand up to CUPE 2745 pressure and provide honest, accurate evaluations of autism course participants New Brunswick will continue as a North American leader providing early autism intervention and autism school services to ALL students not just those who can afford specialized instruction or live in Fredericton where evidence based intervention and autism instruction have historically been embraced.

10 Years of NB Government Inaction On Adult Autism Care: Is It Possible Our Elected Leaders Just Don't Care?

It is increasingly difficult to be polite when discussing the lack of compassion demonstrated by NB governments towards New Brunswick's adult autism population. As the letter from Gary Mayes to the Telegraph Journal in 2005 demonstrates, after two years, at that time, of flat refusals to act, the refusal of our governments to address adult autism care in a systemic, conscientious fashion over the last decade is fixed in stone: 

Today New Brunswick still needs appropriate residential facilities to meet the individual needs of NB adults with autism, particularly those with severe symptoms including sensory challenges, obsessive routines and self injurious behaviors.  An adult autism care network with a center for permanent care and treatment for those most severely affected by autism disorders and expertise available for autism group home care around the province was proposed by UNB Professor Emeritus (Psychology), clinical psychologist and autism expert Paul McDonnell in 2010.  That proposal would also build on the success enjoyed by New Brunswick in early intervention and school services; areas which also need improvement but have been recognized as models worthy of emulation.

The McDonnell  proposal has received no serious consideration from NB's current government. That was made clear to me in a pre-Christmas 2012 chat at Kings Place with Ken Ross, Assistant Deputy Minister of Health.  When I raised autism issues for discussion with Mr. Ross and indicated ASNB's interest in adult autism care with him he diverted the discussion by asking questions about ASNB's organizational status even though ASNB is the most transparent disability advocacy group in NB, is totally conflict of interest free in that it receives no financial subsidy from the government, and operates, unlike another major community organization, at arms length from government.  While not being financially indebted to the government ASNB has consistently invited government and party leaders to ASNB meetings, an offer which has been recently been taken up by EECD Minister Jody Carr and NDP Party Leader Dominic Cardy.

Mr. Ross's attempt to change the conversation was exactly the same tack he took over a decade ago when ASNB was advocating for evidence based early intervention for New Brunswick's autistic children.  Ultimately the Department of Health transferred responsibility for providing early intervention to the Department of Family and Community Services as it was then called even though autism disorders are, and were, recognized as mental health disorders by the Diagnostic and Statistical Manual of Mental Health Disorders versions, IV and 5.  We did ultimately get back to adult care in our pre-Christmas discussion but there was no indication from Mr. Ross that he was even aware of the network proposal  suggested by Dr. McDonnell, a proposal which was consistent with positions taken over the past 10 years in meetings with and submissions to the Province of New Brunswick.  Ken Ross is not an elected official but he is a key autism adviser to New Brunswick ministers of health over more than a decade.   His lack of professed awareness of the ASNB or McDonnell positions is a strong indication that our elected officials have either ignored or outright rejected the proposed modern autism adult care network whether they were, or were not, acting on Mr. Ross's advice in doing so.

While NB has done much to help autistic children and students our governments  simply refuse to seriously address the needs of  autistic adults particularly those with severe challenges who must live out their adult lives in the psychiatric hospital in Campbellton.   It is difficult to avoid the conclusion that, when it comes to autistic adults in need of residential care and treatment, our governments, and/or some of their key advisers,  simply do not care.

Will New Brunswick Ever Act To Provide Adult Autism Residential Care?

The Campbellton Based Restigouche Psychiatric Hospital

 is the Only NB Based Residential Care Option for Severely 

Autistic Adults in New Brunswick

June 22, 2013

David Alward, Premier's Council on Status of Disabled Persons 
Hugh J Flemming, Minister of Health 
Madeline Dube, Minister of Social Development 
Dorothy Shephard, Minister of Healthy and Inclusive Communities 

Dear Premier Alward and Honourable Ministers:

Re: Residential Care and Treatment for NB`s Autistic Youth and Adults

I am the father of a 17 year old son with severe autism, developmental delays and epileptic seizures.  If his mother and I were to perish in an accident tomorrow my last thoughts would probably be filled with the knowledge that New Brunswick lacks anything resembling adequate residential care and treatment facilities for youths with severe autism and related disorders.  In that regard nothing has changed since the attached 2005 Toronto Star article, in which I am quoted,  concerning the youth who was housed on the grounds of the Miramichi youth correctional facility solely because he was severely autistic.  Shortly thereafter, in part at least because of Toronto media attention, he was moved to the Spurwink facility in Maine. 

As our son ages into adulthood we, his parents, will likely grow feebler and ultimately will die. No adult care facilities for severely autistic adults who require permanent residential care and treatment exist in New Brunswick.  I have worked on this issue over the past decade and met on several occasions during the Lord and Graham government eras with Ministers and even with former Premier Graham.  Even before the Miramichi youth situation arose I advocated with other parents to move an autistic adult out of the Saint John Centracare facility.  I have visited Centracare on more than one occasion and I have also been given a tour by the operators of the Campbellton psychiatric hospital where some autistic adults live out there lives.

With that lengthy advocacy involvement on adult autism care, and lack of government response,  I did not honestly expect this administration, which repeats community and inclusion cliches in many government and official statements, and even pays for a new "community" government department, to actually take action on the issue of adult autism care and treatment.  I say this in the interests of candor not confrontation.  

Despite my skepticism about your philosophically driven approach to government I still have to hope, in the best interests of my severely autistic son and others, that you will, as the Lord and Graham governments did on early autism intervention, autism trained education assistants and reversal of the decision to close the Stan Cassidy tertiary care autism team, look realistically at the issues of adult autism care.  I ask you to take an evidence based approach to adult autism care issues. I ask you to take action.  I ask you to do something about the problem.

In that regard I refer you, once again, to an interview with  New Brunswick autism expert Dr. Paul McDonnell, UNB professor emeritus (psychology) and clinical psychologist, in 2010 in which Dr. McDonnell commented on the need for an enhanced adult residential care network:

Autism services needed for N.B. adults

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes. "What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists."

The professor, who has spent 20 years studying children who have autistic spectrum disorders, said New Brunswick could look to the programs being implemented in the United States where local governments have funded facilities that provide independent living options for people with disabilities. 

These facilities can be expensive, but McDonnell said the costs can be even higher in terms of the "human costs" if these reforms are not implemented. "In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community," he said. 

Enhanced network 

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership. The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes. "The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

The 2005 Toronto Star Article follows. It demonstrates clearly how long these autism youth and adult problems have been festering in New Brunswick. Please take steps now to address these issues that torment so many with autism and their families in New Brunswick.

Respectfully,


Harold L Doherty
Fredericton, New Brunswick

cc. Brian Gallant, Leader of the Official Opposition Liberal Party of NB
     Dominic Cardy, Leader, New Democratic Party of New Brunswick
     David Coon, Leader, Green Party of New Brunswick
     Facing Autism in New Brunswick
     Media

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Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital. 

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

"We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.``

Talking Autism In New Brunswick With NDP Leader Dominic Cardy

Together with New Brunswick's foremost autism expert, clinical psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell,  I enjoyed a visit to NB NDP headquarters on Prospect Street in Fredericton this afternoon for a direct, candid and open minded discussion about autism services in New Brunswick with NDP leader Dominic Cardy and NB NDP Executive Director Amanda Francis.  We covered a lot of ground with Paul reviewing early intervention, school and adult care autism services along with the parent advocacy that led to those services being provided. (I chimed in on occasion).  

In fact everyone contributed to the discussion. It was refreshing to discuss autism issues without having to break through a fixed mindset.  Mr. Cardy's office had responded promptly to the February 7. 2013 Autism Society New Brunswick invitation to attend our AGM  and Ms Francis indicated Mr. Cardy would be pleased to meet with us.  With all the news breaking this week of the NDP role in the anti-patronage bill and former Liberal Minister Kelly Lamrock joining the NDP I was fully expecting a postponement of the meeting.  The meeting went ahead though and it was everything you could hope for in discussing a cause, in our case autism, with a political leader. 

Mr. Cardy also re-affirmed his commitment to attending the Autism Society New Brunswick meeting at UNB Fredericton, MacLaggan Hall  on March 23 beginning at 12:30.  

On behalf of ASNB I want to thank Mr. Cardy and Ms. Francis and say that we look forward to continuing the discussion!

No Meaningful Inclusion, No Community Living for NB Youth and Adults With Severe Autism Challenges

                                              Resigchouche Regional Hospital Centre

As an Autism Society New Brunswick representative I attended a meeting held at the Restigouche Regional Hospital Centre a few years ago to participate in a meeting to review the operations of the RRHC and to vote on its future, specifically whether to continue to operate or to close. I voted to continue to operate the RRHC. There were autistic adults who had been living there for many years.  No alternative in New Brunswick then existed for these adults with severe autism challenges.  The vote was conducted and reluctantly agreed to by me, and all other stakeholders present, because no alternative accommodations existed in NB for the residents of the facility.  Today  no alternative has been developed despite representations made to government over and over and over again.

Millions forWoodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question, Facing Autism in NB January 25, 2012

As the title to the above comment I made on this blog on January 25, 2012 indicates money is not necessarily an obstacle to construction of a modern, humane adult autism care network.  Money despite challenging economic times has been available for projects such as the Civic Centre for residents of Premier Alward's riding. Money has also been spent on sending autistic youth and adults out of New Brunswick to receive the care we could provide in New Brunswick if outdated, non evidence based models of community and inclusion did not dominate the thinking of our government leaders, educators and service providers. As former Conservative cabinet minister Tony Huntjens indicates in his comment on the above post between $300,000-$600,000 annually has been spent on just 1 or 2 persons living at Spurwink, money that could be used to build a network of adult autism facilities here in NB:

I totally agree with you Harold. When I was minister of FCS we had to use facilities in the State of Maine at an annual cost of $300,000 per person. I had planned on pursuing the initiative you speak of using the State of Maine model...this would keep the autistic person closer to home in familiar surroundings, it would create employment so that the $600,000 now spent in Maine could be used to pay for these services at home. As you know, my efforts were derailed and I had to resign as minister. These financial facts I speak of need to be brought to the attention of the present government...perhaps they will see the light.

Keep up the fight and I personally wish you the very best of luck.

Tony Huntjens, January 2012

Tony Huntjens was a cabinet minister during the Lord government years and showed himself to be  a true friend of New Brunswick's autism community as he remains to this day.  Although not a member of the legislature, or the current  government he has continued to be a supporter of children and adults with autism. I attended a meeting with a minister of the current administration on adult care over a year ago in which Mr. Huntjen advocated forcefully  for autistic adults in New Brunswick. His efforts, and those of everyone who attended the meeting were not met with any results by this current government which believes that all needs of autistic children and adults can be addressed by feel good cliches about community and inclusion.  His comments 13 months ago on this site are an accurate reflection of what took place almost a decade ago.  The adult autism care he described then remains largely unchanged today.  

Things were so bad then that an autistic boy was housed on the grounds of a youth correctional centre, a jail, before being sent out of the country to the Spurwink facility in Maine where the $600,000.00 annually that Mr. Huntjens spoke of was being spent.   Matters have not improved under the current Alward-NBACL government.    Things were bad then and ... they are not one bit better today.  

Social policies including  early intervention, education and adult residential care policies are now set largely by the New Brunswick Association for Community Living  which has extremely close ties to the current government.  Despite the wonderful sounding name NBACL turns its head the other way when autistic children are excluded from New Brunswick schools and autistic adults are sent to live on general and psychiatric hospital wards ... if they have anywhere to live at all. 

The Autism Society New Brunswick made representations annually to the Lord, Graham, and  the Alward government,  to develop a modern, humane autism residential care network as described by autism expert Paul McDonnell a Psychology Professor Emeritus and practicing clinical psychologist who was instrumental in the autism progress New Brunswick made in the pre-Alward era.  

Unfortunately the Alward government has not seen the light as Mr. Huntjens had hoped.  New Brunswick adults with autism and their families have no reasonable basis on which to believe that their needs will be met, or that their voices will even be heard (1a,b),  during the reign of the current administration.

For New Brunswick youth and adults with severe autism challenges inclusion and community living are simply cliches uttered incessantly by those who pretend to care about their well being. 

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(1) (a) 

January 4 2012

Dear Honourable Premier, Honourable Ministers 

and Respected Recipients

Re: Adult Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need  

I am the father of a 16 year old son with severe Autistic Disorder and "profound developmental" delays. He is now 6'1" with the strong, solid physique his father once had in younger days.  At some point in the future I will be too frail to provide the care he requires and ultimately will of course no longer be available at all to help him. I began my involvement in autism advocacy in New Brunswick approximately 13 years ago.  Along with other determined parents I fought hard, very hard, for early evidence based intervention for autistic preschoolers and for the means to deliver those interventions. I advocated strenuously for autism specific trained education assistants, teachers and resource teachers. Some success has been enjoyed because of the efforts of parents of autism in the area of preschool and school services. New Brunswick has even been cited as a model from which American authorities could learn by the Association for Science in Autism Treatment. The same can not be said, at all, when it comes to adult residential care and treatment 

I also advocated for  adjustments to the total inclusion education model in our schools.  My son's self inflicted bite marks on his hands and wrists declined and disappeared entirely once removed from the mainstream classroom where he was overstimulated, overwhelmed, frustrated and learning nothing because of his serious autism deficits. I have been a determined opponent of the excessive dominance in our schools and facilities of rigid, ideologically based inclusion and community models. This mindset discriminates against severely autistic persons by failing to accommodate their real needs.  Our children have, at times, been sacrifices to the vanity of a community movement which can not adjust to differing needs, experiences and expertise. I participated in regular disability committee meetings held by the Department of Education until they were disbanded, the MacKay review and the Ministerial Committe on Inclusive Education. Believe me or not but many teachers and teacher representatives have told me in confidence that they shared my aversion to the rigid inclusion model which has caused considerable suffering to some children and has disrupted the education of others unnecessarily. My son has been accommodated because of my advocacy and because educators who dealt directly with my son were conscientious, could see what he needed and acted in good faith to help him. I know that not all severely autistic children have been as fortunate.

Nowhere has the insistence on an inflexible and non evidence based inclusion model hurt autistic children and adults more though than in the area of  residential care and treatment as they move from childhood to adolescence and ultimately adulthood. What awaits is a model which includes a belief in "community" backed up by group homes with untrained, underpaid staffers at one end of a spectrum of care.  At the other end of that spectrum is the regional psychiatric care hospital in Campbellton. In between the two ends is a huge gap. What is need is at least one centrally located permanent residential care and treatment facility for severely autistic adults.  Such a facility could be modernized and based on existing models in the world. It could include the professional assistance needed to provide care for severely autistic adults in a setting designed to provide them with a decent life, with continuing education and recreation opportunities.  The facility should be based in Fredericton, not because I live here but because Fredericton is where our evidence based autism interventions and facilities began and grew.  It is centrally located and it has a naturalistic environment with many woodlands, trails, parks and outdoor areas together with indoor recreational and entertainment facilities. 

I realize the current economic realities in NB, in Canada and the world work against any consideration of the type of facility that is needed. But economic realities always weigh in and have done so over the last decade that I have been involved with trying to advocate for a reality based, evidence based residential facility for autistic adults in need of a permanent home when their parents age and pass on.  Ever present too, and just as big an obstacle, is the belief that citing "community" cliches will actually help those who are most in need of help. 

I have visited Centracare years ago with the father of a adult autistic son who resided there at the time. He told me of seeing his son dressed in a hospital "johnny shirt" in a room with a cement room and a liquid substance on the floor. I did not know whether to believe  him or not until we arrived and again found him in the same room in the same condition. At least one autistic youth and one adult have been sent to a facility in Maine at considerable financial expense and considerable emotional stress for families living on the other side of an international border.  I have had parents email me to tell me of their young adult autistic children hitting their head and having to wear self protective head gear at home while parents struggled to provide care. I was told of an autistic adult living on a general hospital ward for a time in Saint John. I am aware, as are we all, of the autistic youth who lived for a time on the grounds of the Miramichi youth correctional facility before being sent to the a Spurwink facility in Maine. 

In early intervention and in school services both Liberal and Conservative governments have been of some assistance, have helped to provide needed, evidence based services to some extent. I ask that the same spirit be applied to developing a modern, decent residential and treatment facility for severely challenged autistic adults in New Brunswick. Nothing has been done for years.  We have failed New Brunswick's severely challenged autistic adults. Community rhetoric has not helped.  Autistic adults need a place to live.  My son will need a place to live with access to professional autism care and autism trained staff, a place with educational and recreational dimensions to provide a decent life for him and others like him.

Please advise whether your government is considering helping autistic adults and is working on a modern, reality based model.  If that is not in the works, please say so straight up.

Respectfully,

Harold L Doherty, 

Conor's Dad

Fredericton (Nashwaaksis)

(1)(b)

Dubé, Hon. Madeleine (DH/MS)	1/5/12
to me

On behalf of Minister Dubé, I acknowledge receipt of your email.  Please be assured that it will be brought to her attention. 

Thank you for taking the time to write to the Minister. 

Yours, 

Lynda Godbout

Executive Secretary/Secrétaire exécutive

Minister's Cabinet/Cabinet de la ministre

Minister of Health/Ministre de santé

Tel: (506) 457-4800

Fax: (506)453-5442